August 30, 2010

I'm closing this particular post to comments. Sometimes I need to hear, but occasionally, I just sort of need to say.

A good and thoughtful friend asked me recently to name the three hardest things about my life. It was an interesting question. While answering it (and sharing my answer here) is extremely self-indulgent, and with an acute awareness that my life is a parade of royal indulgences compared to what most parents in my position deal with, here's what I said. I answered very quickly, with almost no thought, but days later, this still feels accurate.

I am tired of failing the people around me. Particularly Schuyler, I hope it goes without saying, but yeah.

I am tired of being poor.

I am tired -- I am exhausted and worn down to a grooveless record by it -- I am very very tired of being afraid of the future.

August 25, 2010

Fighting the battles for a special needs child changes a person. I suspect every parent of a kid with a disability will tell you the same thing, how the people they've become are so far from where they began. And while it's fashionable and swell to talk about the positive changes and the ways we grow as people, the reality is that we also change for the worse. We harden to the world sometimes. From our positions of desperation and occasional lack of empowerment, we become cynical or jaded. Or even paranoid.

At the very least, we can become overly sensitive.

I can make all the excuses I want about why we reacted the way we did to our first meeting with Schuyler's new mainstream teacher. I can talk about red flagging, which is a very real phenomenon. I can talk about how we truly felt, in that moment, that we were being snubbed. I don't wish to minimize how that can feel, and how very often that is the case with parents of kids like ours.

But the thing I need to do now, most of all, is to apologize to Schuyler's new teacher. I received an email, never mind from whom, that shed a lot of light on the situation, and made me realize that yes, we almost certainly misread the situation. And because I am who I am, I took that misunderstanding and put a microphone in front of it. For that, and for hurting the feelings of a good public servant, I am truly sorry. I look forward to the opportunity to make that apology face to face.

Here's the other thing I need to say. As humbling and even mortifying as it is to come before you and make this apology, I'm still happy to do so. More than happy, I'm relieved and cautiously optimistic. This teacher apparently loves Schuyler, and while I can't imagine she'll ever grow very fond of Schuyler's jackass father, I nevertheless believe that she WILL be open to trying to help us reach our daughter. The fact that my take on the situation was so completely wrong could mean that a different, better experience might just be possible. It's worth a try.

Am I an asshole? I think probably yes. But my daughter isn't (well, not most of the time), and I'm hopeful, even in my contrition, that things might just work out for her.

August 22, 2010

I've written at length about the anxiety we experienced last spring in Schuyler's most recent IEP meeting (here and here and here), so you can imagine there's a certain amount of trepidation around here as we start back up. Nothing has really changed over the summer, except perhaps that everyone has had time to either think about what's best for Schuyler or entrench themselves more deeply in their positions.

Well, perhaps some of us have been doing both. I'll own up to that.

A few days ago, Schuyler's school held its annual "Meet the Teacher" hour. It's not a big deal, just a chance to see the classroom and meet with the new teacher and dump off the required metric ton of school supplies. But for us, this first meeting with Schuyler's mainstream teacher has always presented an opportunity to try to measure one thing in particular.

Is this teacher going to understand? Is this teacher going to get Schuyler?

This year, we had an additional concern. At last spring's IEP meeting, we were informed that the school's diagnostician wanted to do an evaluation of Schuyler that she anticipated would result in my daughter being identified as mentally retarded. Furthermore, she expressed the opinion that it was extremely unlikely that Schuyler would ever be fully mainstreamed. This evaluation met with the tacit agreement of the rest of her team. (It's probably worth going back and reading what I wrote at the time, "Truth can be a monster, too".) This year, we're operating under this new reality, or rather this new reality as defined (and data-supported, by golly) by the school.

Schuyler's special education team remains the same this year, as it has pretty consistently for a while. The "Meet the Teacher" hour has always been an important one for us, in that it has given us our first glimpse of how Schuyler's mainstream teacher might approach her. We've had positive meetings in the past, such as last year when her new teacher admitted that she was reading my book in order to try to have a better understanding of how Schuyler works, or the meeting with her second grade teacher, the one who eventually started studying up on brain disorders like Schuyler's and who expressed her desire to continue towards special education certification even after Schuyler had moved on. We've also had bad vibes at these meetings, when we met teachers who seemed friendly enough but who seemed to put up the wall, the one that suggests "You are parents and I am a teacher, and while I don't know for a fact that you are morons, let's just start there anyway." And our impressions turned out to be sadly prescient.

This year, however, we wanted to impress upon the new mainstream teacher that our own personal expectations were going to be much higher than what her IEP indicated. We wanted the new teacher to know that what we wanted, what we expected, was for her to be an overbeliever in Schuyler.

Well, we didn't get the opportunity. To put it bluntly, we were completely and, we believe, deliberately blown off.

When we came to the classroom, the new teacher was greeting and talking to other parents, but from the moment she saw us, she could barely give us the time of day. She was short with Julie for having some trouble with Schuyler's desk, and was unfazed when the problem turned out to be that the desk had been placed backwards. She wouldn't make eye contact with either of us and placed herself on the opposite side of the room from wherever we stood. When I finally walked up to her and began asking questions of her, she answered ONE of them, then turned and actually initiated a conversation with another parent.

It was rude, but more than that, it felt deliberate. She actually refused to talk to me about my daughter. I wondered if I was just being overly sensitive until Julie said, "Wow, I don't think I've ever seen anyone be that rude to you, ever."

I don't know anything about this teacher, other than the fact that she did work with Schuyler a little in a supervisory capacity last year in the after school program. She may feel like she knows all she needs to about Schuyler, and therefore our input isn't necessary. God knows I've met plenty of teachers who wear a very thinly veiled contempt for the parents of their students, and I understand that they've probably got perfectly understandable reasons for feeling that way.

But when I mentioned this on Facebook, one person suggested another possibility. "It sounds like you are what is known as a 'red-flag parent' - you actually want them to do their job, follow the law and listen to you and your concerns," she said. "They don't like that, because it costs them time, effort and money."

That seems a bit extreme, but I don't know. That may very well be the case. And if it is, then fine. I can't believe at this stage that anyone at Schuyler's school would ever think we might respond well to a "shut up and go away" vibe, but sure. We can start this year off like this. We don't have to have the conversation about our expectations for Schuyler's future during the "Meet the Teacher" hour.

We will certainly be having it, though. Sooner rather than later.

When I wrote Schuyler's Monster, I gave the book an ending that felt positive, but not for narrative reasons so much as because that's how our situation felt at the time. Her new school, our new community, all of it felt positive, like we'd begun a new chapter in Schuyler's life. But the reality is that even in a good school, the people who teach a child can lose their way. Even in a home where both parents advocate hard for their kid, they can miss the keys that open the right doors. There aren't any tidy endings or rousing victories. Only the ongoing work, the struggle to get it right, and by doing so, to give her a chance in this rough world.

I know that Schuyler's school district is one of the best in the state, and maybe in the country. And I certainly understand that by now, the teachers who work with Schuyler, including her new mainstream teacher, feel like they know how best to teach her, since they know her and have been working with her for a few years now. But the fact remains that according to their own evaluations and their own observations, the way things have been done haven't been working. With all due respect to the skills and the hard work that have been brought to bear on Schuyler's education so far, I think it's clear that being an "expert" in Schuyler hasn't been enough, either from them or from us. Something has to change, and some kind of new approach is necessary.

And if we have to be red flag parents to make it happen, then we're okay with that. We've done it before.

August 7, 2010

Last weekend marked a strange anniversary. Some years I remember it, and some go by unnoticed. Perhaps because the past week has been sort of awful and reflective on a bunch of different levels, this year I've been thinking about it a great deal.

It has been seven years since Schuyler was diagnosed with bilateral perisylvian polymicrogyria.

I think I can safely say that I've never experienced as much change, as much growth and heartbreak and joy and failure and LIFE as I have in these past seven years. In a very real sense, I feel like a different person than I was that beautiful summer day in Connecticut when our world came crashing down around us, albeit soundlessly and invisibly to the rest of the world and particularly to Schuyler. I remember how on that sunny afternoon, she kept spinning in her little private, wordless world, the one she still visits from time to time but no longer seems to live in.

Our world fell apart, but it came back together again, completely different and not pretty, but somehow stronger. The worst case scenarios we were given were mostly not to be. Schuyler has a few things she can't eat and a few tasks she finds difficult to accomplish with her clumsy hands, but she's otherwise completely ambulatory and mostly unmarked by her disability. She sometimes experiences a strange anomalous electrical storm on the left side of her brain when she sleeps, but it doesn't seem to be doing anything other than just happening. Schuyler's not having the seizures that we were told were probably inevitable, and I am beginning to feel ever so slightly comfortable with imagining a future without them ever arriving. School is hard for her, and I am no longer confident that her team really understands her or what she's capable of. But she's also in a good program where even when they get it wrong with her, they are getting it more right than most schools ever would. She's delayed and unable to speak, and she might always be, but she's not trapped in her secret world anymore. She's trying with all her heart to be a part of this one, this beautiful, hateful, hard grand world that has never understood her but which has mostly welcomed her just the same.

As for me, I've come to see my weaknesses, as a husband and as a provider, and as a father. As aware as you may believe you are of the things at which I have failed, I hope you'll understand that I am even more acutely aware of them. But at the same time, I've grown as a person. I've become a better father, and I've learned to trust my instincts with Schuyler, because even when I'm wrong about what she can do, I like to believe that I mostly err on the side of overbelieving in her. I've learned that everyone needs people who love them enough to overbelieve in them. In Schuyler's case, she has a funny way of ultimately meeting those expectations, albeit in her own time and in her own way.

I've learned over the past seven years that when Schuyler stumbles, when she doesn't meet academic expectations or fails to communicate the things that are happening inside her broken but beautiful brain, she usually does so because someone out here in this world has failed her. Her teachers haven't found the tools to teach her or the methodology to reach her. Or her parents have dropped the ball in some way or another, or the technology that is supposed to help her is inadequate to the task.

Perhaps that overbelieving is informing my perspective, but I believe that most of Schuyler's failures are ours more than hers. And in seven years, I've learned to embrace the ancient wisdom of the Chumbawamba. We get knocked down, and we get up again. Oh yes.

Schuyler's diagnosis didn't change who she was. She's had her monster since before she was born, since before she even looked like a tiny little human fetus. She had her monster when she was a guppy, and probably before we even knew she was coming.

No, her diagnosis changed who we were, and who we are today. And if it wounded us, it made us stronger, too. Not like an athlete whose body becomes beautiful and efficient through training and exertion, but like some old scarred animal who has been bitten and scratched and chewed up, but who always comes back for more, desperate to protect its young from the biting monsters and an unforgiving world.